For Me, Down Syndrome Is Not Something To Be Afraid Of

Jun 27, 2019

It was a typical day for any expecting mother. It was just another ultrasound appointment, and everything was going as planned until the doctor discovered something abnormal in the prenatal screening.

In the video above, Jennifer describes the day she found out her unborn child had Down syndrome.

As she reflects on that day, she speaks about the pressures she felt at the clinic once she made it clear she wanted to continue with her pregnancy, and the stereotypes that are often associated with the genetic disorder and of her son.

She also talks about what a delight her six-year-old son is, and why having a son with Down syndrome is not a burden, but a gift.

A transcript can be found below:

“You know, your sixth sense tells you something wasn’t quite right.

And I just thought, ‘what’s wrong?’

So, my doctor could see soft markers for Down syndrome.

I was just stunned. You know because you know I didn’t go there expecting to hear that. I expected to hear everything is fine. You know, this was going to be a great day, and I told everybody about it the day before. Almost everybody [knew] that I was going for this ultrasound.  

I had to just put my phone away. I just... I was shell-shocked, you know, for lack of a better word.

You know, honestly, you’re just sitting there and going, ‘huh?’

I was sort of trying to understand what does Down syndrome mean and she says to me that you know, ‘you need to know what your options are.’ Again, I asked what do you mean by that? She says, ‘well, you’re in that window of if the baby has some issues that you have some decisions to make about whether you want to continue with the pregnancy.’

And I remember looking at her going, ‘There’s no decision for me here. The decision is that I’m having this baby.’

I did feel pressure that day in the genetic clinic that it had to be done and it had to be done in this window, and that I might change my mind, you know, because lots of people do.

But what I do know is that people are often told about the stereotypes that comes with having a child with Down syndrome. And I heard some of them that day, you know, and my little Owen and I have met lots of people now who have Down syndrome — they break that stereotype everyday.

Women are hearing when they are, sort of, given that choice. If we even call it that word — I don’t like the word ‘choice' but choice to me is something that’s informed. And that’s not always informed.

You don’t know. You don’t know what a child’s future is when they’re in your tummy. So, I mean, Owen — he turns six actually next week. Monday is his birthday.

I mean, Owen, he’s delightful. He is funny, he is loving, but he’s moody. You know that, that stereotype that you might hear that people with Down syndrome are always happy — not true.

I recall those early days being told, 'Your son might not talk. Don’t expect too much.'

OK? No, I’m not going to listen to that. I chose very distinctly not to listen to things like that.

I always believed that Owen could be the best Owen that he could be.

His brothers — he has two brothers. Max sees great ability in his brother:

Down syndrome is basically having an extra chromosome and disabilities. So it’s fun to help people with Down syndrome learn. Especially when they’re always going to be right beside you.

Max will say to me, like ‘what’s the big deal? Like, it’s just Owen, right?’

You know, so I think they have a beautiful bond that they will always have.

It is true, you know, that people with Down syndrome can have some health conditions, but it is true that anybody can have some health conditions. It is true that any of us can suffer at some point in your life.

It’s what we do with that suffering.

Owen is not suffering. And I have met very few people with Down syndrome who are suffering. You know, but for me, Down syndrome is not something to be afraid of. It is not something that has made my life difficult. It is not something that has made me, in any way, not want to have Owen in my world.

He is one of the sweetest, kindest little boys I have ever met.”

The Art of Parenting offers an intimate conversation with some of the most memorable families featured in the CBC Kids broadcast series The Art Show. The parents speak candidly and emotionally about how their own history, upbringing, belief system and circumstances that have influenced their parenting style and resulted in the raising of some truly phenomenal kids.

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